Help in the Hurricane: How Social Media Rescued a Man with Mitochondrial Myopathy

“As you all know, being the creative type that I am, I love do-it-yourself projects … However, I found myself in the middle of a rather unusual project, which involved a lot of creative ‘thinking outside of the box,’ and it was more than just a do-it-yourself. It was more of a ‘do it ourselves’ project. And we did it. Successfully. Here’s the story of how we helped Nick Dupree.”

So begins an amazing two-part blog by Crystal Evans of Braintree, Mass., a “WAHM” (work-at-home mom) with mitochondrial myopathy, and owner of the online shop Little Free Radical.

The blog relates how Evans and a network of people around the country, connected only through Facebook, were able to figure out how to power a ventilator through a car battery, raise money, buy supplies and hand-deliver necessary equipment, food and water to a wheelchair- and vent-dependent man with mitochondrial myopathy stranded in the immediate aftermath of Hurricane Sandy.

Evans, who uses a wheelchair due to mitochondrial myopathy, clearly is the kind of person who jumps in when others need help, and Hurricane Sandy brought out this instinct quite strongly. When she learned through Facebook that her online acquaintance and disability activist Nick Dupree was stuck in Manhattan with his partner Alejandra Ospina (also a wheelchair user) on the 12th floor of an apartment building with no power, no water and no one coming to provide Dupree’s needed 24-hour skilled nursing care, Evans co-led a social media effort to get him help. In addition to his ventilator, Nick needed to power a cough-assist machine, oxygen concentrator and feeding pump. (For a variety of reasons, explained in the second part of Evans’ blog, Dupree did not feel safe evacuating to a hospital.)

“I’m amazed at the amount of teamwork that has occurred in trying to get Nick and Alejandra help,” Evans wrote in her blog. “Strangers all working together to help make a plan to get supplies in to get equipment working. People donating to help fund supplies ... I emailed FEMA this morning to let them know WE had taken care of it together. Nick has a temporary power source because dozens of people worked together through social networking to make that happen. Nick and Alejandra have a team of volunteers because while some of us focused on access to a power source, others focused on volunteer assistance. Complete strangers are helping get supplies up to him. It’s amazing.”

Dupree, who got his electrical power back on Nov. 4, posted this to his Facebook account: “I’ve survived this long (fifth day of no power and counting) because of social media organizing and direct help from Crystal Evans-Pradhan … So very overwhelmed so many feel I’m worth saving. Thank you all so very much!!!!!!!!”

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